Re: Another new member

Well, I just got another update from my brother. Yesterday he had the CT scan and the dr called him and left a message saying that he was very pleased with the results and that they were much better than he expected and that he would call today with more information about the results. So, he was thinking, "FINALLY, some good news!" Then he got a call today. At first the dr. was sounding fairly positive, but then said that when he went to do the stent replacement that he found a cavity that he's never seen before in any of the other patients he's seen and that it prevented him from placing the stent where he wanted to. There was also a "pus like" mass that could either be an infection or another cancerous tumor. He apparently feels uncomfortable with this situation and wants my brother to go back to Mayo for more imaging and metal stent placement. So, now he has to wait to get back on their schedule and feels like he has wasted the last couple of weeks. When he was last at Mayo, his bilirubin was at 2, and he was ready to do chemo, but Mayo said that he should be able to have the chemo done and the metal stent placed locally. He's very discouraged that now he has to go back for another ERCP and all the unpleasant side effects from that and the fact that he is about 2 1/2 months out from diagnosis and they haven't been able to start any treatment yet. As Lainy said, CC is really a roller coaster ride. I just feel like the clock is ticking away while we're still trying to get chemo started so that he can start to get better!

Re: Another new member

Peggy, I hate to be negative but to me when a DOC is playing the yes/no game
it's time to change ONCS or just go to Mayo. I don't think it is too late I think your brother needs a proper diagnosis! I am curious if this ONC has treated other CC patients. Where is your brother located? The best advise I can give is to get into Mayo ASAP! STENTS really need to be placed by someone with a huge amount of stent procedures done. Has Mayo been called yet? Why does he need another ERCP? I would be calling the ONC's office daily until he would get me in to Mayo. Either that or like I mentioned in another post just go to the Mayo ER and perhaps he can be checked in for what ever has to be done. Sorry he is having to go through all this. We have to be very strong and that also means being very vocal sometimes to get the job done. Please keep us updated and to me the good news would be that he went to Mayo!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Another new member

What happened last week is that his local oncologist wasn't in the office on the day that he called to say that he had become jaundiced again. The ONC called in and got the message and referred him to someone else. The local ONC has treated other CC patients (and did his residency at Sloan Kettering). My brother was referred to the local ONC by his ONC at Mayo and apparently they have worked together. The surgeon who did the ERCP on Friday told my brother that when he  was at the University of Minnesota for 6 years that he did ERCPs every day. He apparently called some of his "friends" at the U of M today to discuss my brother's case and they advised that he return to Mayo. My brother is located in Minneapolis, but in a suburb that is pretty far out of town. I'm not sure, but from his understanding of the situation, the stent was not placed where the surgeon really wants it and it is very temporary? The dr did say that he isn't sure whether he has another (new?) tumor growing or whether it is an infection. He was placed on oral antibiotics on Friday. The drs office was SUPPOSED to call Mayo today to make an appointment for him to go back, but he hasn't heard back from them, so I told him that he shouldn't wait around and should call his ONC's office at Mayo and tell them what's going on and say that he needs to come down asap! Mayo does NOT require a dr's referral. He got in originally by just calling Mayo and telling them that he had CC and wanted to be seen at Mayo. Thanks, Lainy, for your support. It really helps to have someone to "talk" to about all of this!

Re: Another new member

Peggy, the important thing is he get in to Mayo the rest is water over the dam so to speak, it could be me my gut does not feel good about this ONC. He should have talked to your bro himself. He could have gotten a fax of the test results and called him. Somehow I am not surprised he didn't hear from the ONC's office today. Again he should call Mayo in the morning and get himself in. Sorry, I am so stubborn on this but it just doesn't sound right to me. I know that once he is back at Mayo you will feel stronger again too. Please let us know what happens.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Another new member

Peggy....metal stents are permanent and will prevent (in almost all instances) contemplated resections in the future.  Not sure that I understand the comment about placing the stent somewhere else then anticipated. Was it that the area was blocked?  If indeed an infection is brewing then your brother needs to be treated for that.  Hoping to hear that the long trip to Mayo will answer these questions.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Another new member

Do metal stents prevent radioembolization?  I seem to recall that the doctor from Moffitt that did the radioembolization video (linked in the video section of this website) was down on metal stents.  If you haven't watched that video, I highly recommend it for understanding the procedure and its benefits.

Anyway, let me echo Marion and suggest you ask your oncologist about what treatment options are impacted should they put in metal stents.

Jason

Re: Another new member

I don't know whether the metal stents prevent radioembolization, but he doesn't have a metal stent (yet) and Mayo told him that he wasn't a candidate for radiation (or surgery).

Re: Another new member

I finally have an update on my brother. He went to Mayo this week and had another ERCP and stent placed on Tuesday. The procedure went well and they were able to place 2 metal stents so that now both lobes are draining. Hopefully that will help with the jaundice so that he can finally begin his chemo treatments. I know that it has been discouraging that he was diagnosed in May and still hasn't been able to begin his chemo!

Re: Another new member

Hi Peggy. I can't believe that took so long but the important thing is finally, it is done. He should be feeling better already although some yellow tint hangs around a few weeks. Do you know when he begins his chemo? Thanks for the up date and please let us know how the chemo goes. Take care.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Another new member

Hi Peggy,

Glad to hear that your brother got his stents placed finally and I hope that they work well for him. Once they start draining and clearing up the jaundice then his onc will have a much better idea as to when his chemo can start, hopefully that will be very very soon!! Let us know how everything goes and what they say about his chemo.

My best to you and your brother,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Another new member

Peggy,
How frustrating for your brother to have this infection and delay to chemo. How is he doing now?
Willow

Willow

Re: Another new member

Peggy,
I'm sorry I didn't see your update till after I posted asking how your brother is doing. That's great to hear he's getting the jaundice under control with the stents and will be moving forward with treatments soon. I'm sure it seems like an eternity and you all can't start soon enough. Best wishes to you and your brother.
Willow

Willow

Re: Another new member

Peggy....good to know that everything went well.  And, as the others have mentioned, your brother will feel better really soon.  Things are rolling now
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Another new member

Dear Peggy,

   Sorry to hear about your brother. My husband is a Viet Nam Vet and he too was recently diagnosed with cholangiocarcinoma. He was exposed to agent orange while he was doing his tour. We feel there must be a connection between agent orange and this cancer since so many veterans are suffering from this cancer.  Wishing your brother to best and a speedy healing.

Re: Another new member

Hi vrsmith,

I don't know if either you or your husband are on Facebook or not. But if you are there is a page for Vietnam vets and cholangiocarcinoma if you are interested. If so, it can be found here -

https://www.facebook.com/pages/Vietnam- … 0339017522

And of course, we are all here for you too!

My best wishes to you and your husband,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Another new member

Hi all,
I have another update on my brother. He was finally able to start the chemo on August 13th. He has had very little in the way of side effects from the chemo and actually said recently that he felt the best he has felt since this whole ordeal started in May. He had a CT scan done recently and got the results two weeks ago and they were better than hoped for! There were no new growths, the largest tumor in his liver had actually shrunk a tiny bit and his labs were the best they've been since May. We were all flying high! Then, for those of you who have referred to this cancer as a roller coaster, last week we were jolted back to reality a bit, when his labs were all over the place. Still good enough to do chemo, but not great. Monday he started to vomit and he thought it was just from the chemo. (He tends to do well from chemo Tuesday until about Sunday, then vomits a couple of times and is ok again.) Apparently it wasn't, as he started to feel worse and worse and when he had his labs done on Tuesday, they were not good, and he is jaundiced again.

His doctor called the surgeon at Mayo who did his latest ERCP and double metal stent replacement there and he is on vacation. (Of course!) But, he has had so many troubles with the ERCPs that the oncologist said that it is worth waiting until next Monday to have that doc do it again. (He could have someone else at Mayo do it this Friday, but everyone decided that a couple of days won't make a difference.) To say he is discouraged is an understatement. He was told during the summer that these metal stents should last about 9 months and then the options aren't great. They can put plastic ones inside the metal ones, but that it is only a short term solution. The metal stents only worked for about 2 months. I told him to monitor his temp, etc. as I'm concerned that things could get out of control by next week, since he's already having more symptoms because of the jaundice. Are there other things that he should be monitoring while he is waiting to get in to Mayo? Does anyone have experience with what happens when the metal stents fail?

I'm 9,000 miles away in Singapore and feeling very worried and helpless to do anything for him.

Re: Another new member

Oh, dear Peggy I am so very sorry to hear this. Teddy used to get blood infections from his stents like 2 X a year. IF your brother gets chills and fever he needs to get to Emergency right away. Even if he can get to Mayo ER as the fever and chills usually mean infection. Teddy's ONC told him anything over 100o go to ER. They would put him immediately on Levaquin IV and he would feel better already the next day. Sure sounds like a sent exchange is needed but I am not a Doc. Best of luck and please let us know what happens.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Another new member

Peggy....Rather than being occluded (blocked) the metal stents may have shifted.  We have seen this happen quite often on this site.   Fingers are crossed for everything to be sorted out by next Monday.
Hugs
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Another new member

Hi Peggy,

Sorry to hear this latest news about your brother. My dad had a metal stent as well and he had an incident once where his jaundice came back for a bit and he felt really bad at the same time as well. Went to see his gp and then his GI specialist and as quickly as the jaundice reappeared, it cleared up and disappeared just equally quickly. They couldn't say why for sure it happened but it did and he felt great again. So hoping that this will happen for your brother as well and please let us know how things go for him.

Hugs,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.